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Thread: feeling alone

  1. #1
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    Default feeling alone

    I feel like everyone that should try their hardest to understand what I'm going through just doesn't have the time to care. I'm beginning to feel like a burden on eveyone I love. I'm so tired of being sick! I feel like I try my absolute best to not let Lupus define who I am, but if I say one thing about it during a weak moment I'm perceived as a complainer or weak. I just feel like nobody understands how I feel, and it is nice to have people here to vent to, but at the same time it's depressing that complete strangers are more willing to be there when I need someone most than the people that are family. Thanks to anyone listening. The nights are just hard sometimes when I'm awake, alone, dealing with the pain. Sometimes I just feel awful because I resent people that aren't suffering. I know that sounds terrible, and I would never wish anything bad upon anyone, but darnit, I just want people to understand!

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    Many gentle hugs, Mlarie... we're here for you. We understand the long nights and the aching days, and don't judge when someone complains. A shoulder to lean on is so important -

    May the morning bring you a brighter day - and if the day has clouds, know that you can say everything you feel here. And we will listen, share our strengths and share our comfort.
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

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    I'm so sorry that you do not seem to be getting the support and understanding that you need from the people who are the most important people in your life. Either they don't understand or they are in denial. In either case, it is hard on you - I know.
    Last night, I was in such pain and felt like I just couldn't talk about it anymore. I feel like a complainer when I have to say, almost every day, "I hurt..something on me somewhere is always hurting and I just want to scream or cry!" When my husband asks me how I feel, it seems as if I always have the same answer..."I Hurt!" People do not understand this constant pain that we live in, and even when we tell them, they seem to quickly forget that we are ALWAYS in some kind of pain. And if we are not hurting, we are so fatigued that we just can't move. The two together seem to never be understood by our loved ones. That is part of what makes this disease such a lonely one.
    I know it is hard to reconcile the fact that we, here, understand you and support you more than your family. But, I hope that it is at least some small measure of relief to you to know that we are always here for you; that you do have somewhere to go where everyone understands and no one judges. Please know that we do care and that you are never alone.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Stangers are those who don't say Hi to you.

    Hi Mlarie, how are you today? A hello is where it all begins my friend.

    Please know, I do understand what you exactly mean and exactly how feel.

    Hugs,
    Oluwa

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    Hello, Mlarie. Trust that we DO...really, really DO...understand. It's hard to feel like the only one in your circle who has to live their life with pain, fatigue, confusion, skin sores, kidney damage....whatever symptom lupus has chosen to bestow on us. But, it's good to know that there ARE others out there who 'get it' - and who can provide you with a place to vent or cry or ask questions. I've had many sleepless nights and I often stop in here to read posts (even old one's sometimes) or to see if anyone else is awake. You might try it. I think it saved me when I was first diagnosed. I was so scared and sad. I have a good support network (local support group, fairly supportive co-workers, an incredible husband) but the group of friends I have right here on this forum has done just as much to make this road easier for me. I hope you'll stick around and get to know this fine group of people. I'm sure glad I did. I'm sending you the warmest thoughts and a hope for a better day tomorrow.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    I feel your pain- there are days like today when I am in so much pain all I want to do is cry -and sometimes that what you need to do to let it out. Lupus is a very complex disease - it requires a tremendous about of understanding and patience- I sure do hope you feel better - and remember take it one day at a time - as sometimes we just have to let ourselfs just be and take it easy

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    Hi Mlarie,

    I do understand what you are talking about. My family had a family meeting about me last weekend. When I say my family, I mean 3 siblings, their spouses and my mother. Their take I understand is that I need to move away from my spouse and kids for at least 3 months to be healed. I told my brother that I would have to invite a friend and they would be paying for the resort that me and my friend stayed for the 3 months. :lol:

    I hope that today is a little better for you and that you are feeling the lifeline that this forum gives those of us who are lonely and in pain. Just a voice crying into the darkness made light by cyber friends on a forum of understanding.

    hoping for a better day,

    Karen

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    Default thanks everyone!

    I haven't been on in a while, so I'm sorry it took so long to reply. Thank you so much everyone that took the time to try to make me feel better. It really is beginning to feel very comforting to have this group. I've just been so tired and depressed the last couple of months. When I first found out that I was sick I didn't really let it sink in, and now the reality of it all is finally starting to hit, and HARD! I feel so scared and so alone. I feel like I'm viewed differently by everyone now. I feel as if everyone is judging me in negative ways. Most people make me feel like I'm just faking being sick because I don't look sick all the time, and the people that know for sure that this is real make me feel like I should be handling the whole situation differently. It just frustrates me because they don't know how I feel and what I'm dealing with every day. I'm embarrased to go to the mailbox without makeup on because of my rash, what if one of my neighbors saw it, what would they think? I can't go out in the sun hardly ever because I get covered in hives for days. I just feel so very outcasted and alone. I just want to say thanks again to everyone that took the time to care about me. I just hope I can be as much a help to someone else here as you all have been to me.

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    Default you'll never be alone.

    Hey girly.....
    I'm going through the same thing. except with my employer. The last time I was in the hospital they actually called the hospital to see if I had indeed been admited and what room I was in. Most of the time, I think certian people around me think I'm faking everutying. I just want to stay home and sleep all day. I just enjoy crying and playing the pitty party card. So I difinitely know how you feel. Just remeber we're all here for you, some of us right where you are now, and some have a lot more experience then we do. Overall though, these lades, know what their talking about and are standing at the ready to ralley for you for encouragement and praise. I'll even lead....ha...ha...

    I hope you continue to fight, and that you keep putting one foor in front of the other each day when you can.

    Robin
    Robin Lynn Byler
    Live, Laugh and Learn....you never know which one someone else is going to benefit from....!
    Newalla, Oklahoma
    robin.byler@hotmail.com

  10. #10
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    Default hey

    Thanks rlbyler, I think everyone here is just wonderful. I'm going to make an effort to log on as much as I can because I think I just need more positivity in my life right now. Sometimes it's just so tiring to even take a shower, let alone find the energy to be on the computer. I have a two year old, and I think if I didn't have to get up for her every day that I would live in bed! Thanks for the encouragement.

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